Stomach blocked Again boo hoo and ACE results negative

Hi,

I still feel better in the dark.

I wish someone would fix this

First I had better guess that I passed all the imaging tests mainly because I have not heard anything and no news is good news right?  I know for certain because Dr Craig told me when I returned about my swollen leg, that my ACE levels were fine.  I was not sure about why he reminded me that the results are not conclusive but he did.  I kind of hope that means he approves of me keeping on looking. I don't like thinking about the calf swelling that wasn't a swelling because the darn tape measure recorded the same size for both legs.  Oh man, that was embarrassing in front of his medical student too but it still looks a bit deformed to me and I have been having at first intermittent strong cramps there and now one long cramp that does not stop but is tight rather than too painful and I didn't even mention it at the doctor.  I got tongue tied after the tape measure and then did my usual nervous stunt - babbling on. I was looking for something to get out of that appointment rather than get up and walk out of there and then..... I talk to think.  He was open to discussion which was even more unusual so tick, tick and the mind reminded me I needed another script for Maxolon.  So the appointment wasn't totally wasted but they did scare me on the Internet, those comments about going to Emergency.  It certainly wasn't cellulitis like Phoebe suggested.

The Maxolon aren't really working every time I take one with a meal but I have not got anything else that does.

Coronation Avenue, Golden Beach by me

So once I have a meal, I risk staying blocked for 24 hours uncomfortably I may add, blown up like a balloon, unable to pass wind, unable to digest, unable to lie down but I might get a good meal one time and a bad meal the next but it is not really the meal unless I have a problem with meat.  The only time I am more likely to get away with have say 2 meals in a row without blocking is when I eat totally processed food which I don't have to digest much, or rice bubbles or something that turn into liquid before you have finished chewing.  Prawn crackers are good for that and the local noodle shop often has huge bags for $2.80 plus it seems Milo likes them too.  I get away with stuff like that but then I am hungry again in 2 hours whereas if I eat the other kinds with fibre and meat, then I may only get a meal like that once every 3 days or 2 days in a row and then not again till I clear properly because clearing partially builds up over days.  It is so difficult to manage that once again I am tempted only to eat gluten-free junk food knowing I am less likely to suffer.  But at least I am getting away with a whole egg and not just the yolk a couple of times a week now.  That's good!  No hives so far.

Yes that is the edge of my car.  I pulled over especially for that tree.

I eat so many strange things now.  I still have pains from the last couple of days but I think that tapioca pudding I just ate has gone through already so I will be hungry again soon.  And ofcourse this way of eating is no good if I put sugar in to sweeten it up.  But so many of the sweet foods have sugar in them and while my fasting glucose is down to 5.0 like it was the day before yesterday I am not going to deny myself what's in the Devondale "Smart Start" or the yoghurt and I think I can tolerate the inulin on good days sis so I will keep it after all.  I've got some Tumerix if you want that because the H2 blocker interacts.

I've interspersed this post with what I call a golden rain tree.

I've been much livelier because the eye migraine is under control

I have been much livelier for the past 3 days, going out each day but unfortunately mostly for medical purposes.  I have had a sinus CT scan, a plain xray, thyroid ultrasound, and a blood test for my ACE levels but I have no results yet.  It is now the weekend.  I went to 2 different doctors so it is going to end up a mess when my doctor on record finds out and gets her nose out of joint but at this point I don't care.  It was actually Dr Craig who OK'd me having the ACE level check.  Dr Raylea did not want to at this stage.  And everyone who reads this should ask for a thyroid guard when they have just about any imaging done including dental x-rays because you won't get one unless you ask for one.



Right now I suspect I have sarcoidosis after reading about it and the eye problems,  my unknown lung nodule and sigmoid colon granuloma fit right in with it.  I also had a biopsy of something that looks like a keratosis but it has grown since the skin check before Christmas even though I passed the skin check.  It has been both itchy and sore at the same time.  Like my eyes but my eyes have been bad for a long time that is why I had my last eye appointment for glasses earlier than when I was actually due.  And that was around my birthday and my eyes had been sore, blurry and photophobic for some time before that. On and off at first but now it is constantly there even though I have started taking the rhinocort that the optician O'Neil suggested, every time it got very, very bad and then bingo, it works towards a significant reduction of pain. I may have even blogged about it back when I first tried it.  I ran out of rhinocort around Christmas and I was not doing very well then.  I missed out on Christmas.  My eye was so sore that it felt like a migraine on one side of my head plus I had trigeminal neuralgia and still have.  If I stop taking the Rhinocort, I know it will be like hell again. A very strange way to treat a migraine. Other pain in the area could possibly be caused by my right jaw joint that went clunk one day and has been sore ever since....but I have had TMJ problems before so it is not new, except the clunking itself out of place was very obvious this time.  But you know me I can put something out by just bending over or looking upward or leaning to the position that I was forced to adopt when tutoring behind students at their computer workstations.  My elbows are still out of place or something too so much so that I cannot pull on the other end of a toy or rag with Milo because she shakes my her head back and forth sideways trying to yank it from me and she is strong for a little dog, so much so that my "tennis elbows" come right back and they are not insignificant pains either.  All that stuff reminds me of EDS rather than sarcoidosis so I will get back on track.

I did tell Dr Jo that what the optician recommended had worked.  She seemed to be pleased for me and she certainly did not tell me to stop using it which I had expected  just that because Rhinocort is a steroid.  The well-respected optician David O'Neil had suggested that the kind of pain I had and duration of it sounded more like a chronic sinus infection (and I thought to myself, "Like Lyme Disease.") and that it would not go away on it's own.  Like I said it reduced the pain within days but there is always a residual pain deep in my skull at about temple level and the photophobia is not eliminated by Rhinocort either but it helps a lot. I'm spraying once a day. I haven't found anything to deal with the blurs and swimmy patterns and floaters that are starting to make me feel like I have a flash of seeing something that is not there which is a bit disconcerting.  I have been sitting in too dim a light or else my eyes are going dim.  I can hardly see the keyboard after looking at the screen but I cannot put my main interest in life aside so I plod along at the computer anyway.  I don't want to go blind because life without being able to read on-screen or off would be intolerable to me. My mother at 87 is also worried about her eye sight but because of cataracts and glaucoma.  Glaucoma is common in Sarcoidosis too and it seems this Sarcoidosis can come in many different levels of severity. My sisters sarcoid lump went away.  Others have long-term chronic sarcoidosis and when you think about it, although Dad was diagnosed with non-Hodgkins lymphoma I would question that too.  The most common cause of death in sarcoidosis is cardiopulmonary. Sarcoids themselves are not malignant although they can lead to non-Hodgkins Lymphoma I read .

I'm the only one who used it this Christmas Just passed.

I have symbicort for my COPD that I was recently diagnosed with but those symptoms are the same as lung sarcoidosis so I don't know that it should be called COPD yet.  And Lyme disease has all the symptoms I have mentioned so far as well.  Lyme is well-known among the patient community as causing sarcoidosis too. Anyway it is too early to jump to conclusions but even the swollen belly symptom of gastrointestinal sarcoids is very familiar to me as you know.

15 years old, before glandular fever too

And I thought that was huge! 2001?

It is probably better that I leave you with something to read rather than me rave on about something I may not have, but it sure sounds like it with a deepening voice being added to the symptom list as I continue to research.  If I had my life over again, I would study to become a doctor even if I did not practice just so that I could have the perks like access to online databases.  Abstracts from research papers are often enough to learn a great deal in any case.  I was a research assistant and I was studying my Masters Degree so let's just say I already know how to report in an unbiased way but I am NOT attempting that in this blog because I have found that personal experience of your own body is a pretty good determiner of gut instinct too.  This is the first time I have felt that everything would fall into place with this diagnosis.  It is just a gut feeling more so than worrying about something that might not happen.  I'm not scared........yet.

But first before I get into the more official publications, one final co-incidence after finding out I had gg grandmother who was Creole.  The bit about sarcoidosis occurring more frequently and being more severe in African-Jamaicans (other African populations and the Finnish populations too but not Asians or Australian Aborigines. To me that means that everyone in my family needs to get their ACE levels checked to rule out sarcoidosis because it seems like it can cause just about any symptom depending upon where the sarcoids are and how many there are.  I wonder how Brett's pulmonary Langerhan's Cell Histiocytosis fits in.  He has not had any problems for ages though but do you remember that unexplained rash he had?

I had a punch biopsy yesterday as well and this was what a bit of, was sent to the lab.  I just happened to have the pleasure of allowing a medical student to perform it. It was his first and he did well. Not that I have ever had one before.  I asked Craig to do the injection though because that is the worst part.

I keep adding to this entry because I keep forgetting things.

This photo was, taken on a day I was puffy with fluid or something, shows another mark that I asked about but Dr Craig was not worried about it. I've got a few bruises at the moment too but so has Flora which I know worries her just like they did Ninnie.

This is what it looks like today.  I can finally have a shower and wash off what is stuck there today about lunch time.

Sarcoidosis and Lyme: For Your Information Zena

THIS POST HAS BEEN UPDATED

I assume having a pulmonary sarcoid is the same as sarcoidosis?  That is why I thought of you.  It appears that some people who have been diagnosed with Sarcoidosis possibly have Lyme disease. In Australia Lyme Disease is not a truly recognised disease although many of us know it exists so please take a moment to visit this website.

If you are interested in getting tested, you will need a referral but the lab testing here in Australia that I have been referred to is Australian Biologics if you want to Google it.  It will cost $450. Borrelia PCR - urine/whole blood is the name of the test.

I just read that "The Lyme PCR Test is the gold standard for Lyme disease testing accuracy
The PCR test is not well known but very accurate. The Polymerase Chain Reaction (PCR) test confirms that Lyme bacteria are present in the body. The PCR test is relatively new. It is designed to confirm that Lyme bacteria DNA are present. A positive PCR test almost always guarantees that a patient has Lyme disease, if the laboratory work has bee performed properly. Dr. Braccia observes, "A negative PCR doesn't prove a patient doesn’t’ have Lyme however there are PCR strategies that assist in the test confirmation. Another factor that must be taken into consideration is do the fact that PCR test results often vary depending upon which lab performs the test. Therefore it’s important for the physician to use a lab that is accurate in their analysis. " Reference: http://www.prweb.com/releases/2010/02/prweb3542194.htm

However, Australian Biologics is not an approved lab as far as I understand.  Getting a positive diagnosis seems less than 50/50 from the bits of local (Australian Facebook) information I can glean.  A negative here usually means that the diagnosis is not confirmed rather than a definate no to the Borrelia borer (my nick name for spirochete).  So most seem to then go for the overseas, supposedly more reliable test at $3000 which I think throws in a few other common co-infection tests.  I am starting to understand that the type of co-infection profoundly effects the types of symptoms manifested so Lyme disease seems to have sub types.  Not everyone has the neurological Lyme so commonly seen on TV.  I might not be very accurate describing this.  There are others who know so much about it but at the same time some information getting around is not altogether accurate either.  For instance you don't have to have Herx symptoms after treatment and the online community seems to welcome feeling worse before feeling better at least for the sake of hope.  Anyway I read somewhere today that it is a bit of a myth but also that herxing is quite possible.

As far as the lab not being accredited, I am not sure that it is such a bad thing.  I have heard bad things about one that is and given the politics behind the suppression of Lyme in Australia (which I do not understand) perhaps having Government approval is not an indication of accurate testing.  I wouldn't really know.  If we need to we will learn as we go.

One online friend had both the AB lab test and the IGENEX test in the USA and got a positive on both so that she said the top dollar one was a waste of money for her.

I will get around to doing the AB test after I dig up the money.